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I’ve been brooding on this topic for many months, just have not had time or energy to reach conclusions so I can write about it. The issue of whether or not those of us with scars from breast surgery should post photos of said scars on the internet pops up from time to time. Sometimes it is in the form of Facebook users objecting to the pics, or there is discussion about the “arty-farty” photo exhibits of women baring their chests or whole bodies after mastectomy—and whether this is a whole new level of objectifying “boobies”.

I’ve been contemplating and re-evaluating my decision to post my own picture recently, in light of all this discussion. I’ve wondered if I’ve objectified myself—certainly some of the comments I’ve received have been strange, but mostly I ignore it.

I’m still not prepared today to delve into my thoughts and feelings surrounding the objectification, the idea that this rash of photos of women baring their scarred breasts may be supplanting the image I hate: the bald, smiling, pink feather boa-wearing warrior woman—and I indict myself for my contribution to that. I’m still sorting out my thoughts and feelings on it.

But I was pulled into mulling it over today when I saw some disturbing comments on I Had Cancer’s Facebook posting of Stupid Dumb Breast Cancer’s photo of her bare chest, her scars. Most of the comments run the usual way—you go girl, badass, warrior, strong, beautiful, all that. But every so often one of those upsetting (to me) comments popped up. Someone said it was sad, a few others—weird. And the worst: a suggestion the image would scare women out of getting mammograms.

I strive to be compassionate, to have empathy, to always try to see things from others’ point of view. But this is one area in which I utterly fail in understanding another POV. These scars some of us chose to show—this is what happened to us, and what happens, and will happen to many, many women. It is a result of having breast cancer. Denying it, or wanting it to go away, just seems insane to me. Not looking at these images, wishing them away, will not stop the march of breast cancer, and the results of treatment.

I’ve mentioned in MANY posts my dislike of the warrior/battle language in cancer. I cannot help but notice the irony that for all the battle language that exists, I don’t think people actually know what it means. If a person has to “battle” cancer, a person must understand all the outcomes, the casualties, if you will. Does a general devise a battle plan without knowing and understanding the terrain and landscape into which soldiers are being sent? No, all possible aspects are considered: landscapes, dangers, projected life loss, captures…and I don’t know what all, I’ve never been a soldier. So why not know what is involved in the “battle” of breast cancer? I get that not everyone objecting to the pictures engages in warrior language, but I’ve seen a few comments from self-proclaimed warriors who do not seem to want to know anything other than happy, perky, pinky, positive stuff, because the “downer” facts make the battle harder. I just cannot understand this. That will always be a failing of mine, and I am sorry for my lack of empathy here. But I just will never be able to understand that mindset.

When I faced my surgery, I was still an internet idiot about social media in regards to cancer communities (I used the internet for work and hated using the computer in what little downtime I had, so no blogging back then). I only saw a few medical, informational pictures of what my result might look like. I had to deal with the emotional fall out on my own. I had no examples of the sort of “realness” Ann Marie’s photo, or my photo, provide. When I decided to get a decorative tattoo, rather than a reconstructed nipple with tattoo coloring, I had no idea there was this whole movement, like P.Ink, that did that kind of thing. I discovered it as I began researching ideas for my own tattoo.

And I felt so MUCH better once I found these websites, social media outlets, these pictures of reality.

While I still grapple with the objectification issue, the idea that topless scar pictures are being absorbed and used in the Pink propaganda, I cling to the notion—for now—that all these pictures are good. People who don’t want to see what happens to a breast when it gets cancer, well, look away. Keep your heads in the sand, that won’t change the reality of what really happens to breasts when a person gets breast cancer. My picture remains here for now, for the woman who is going through what I went through then—who needs an idea, an example of what her reality will be.

This post is where I am on this subject today. I will revisit it again, later.

Insomnia is a bitch. And a cause of cancer, and I ranted about that ages ago.

So a result of falling asleep too early in front of the tube and being wide awake at midnight is stumbling on an article about a new report pointing out that some large amount of cancers are preventable if everyone would just behave. By behave, I mean: eat right, don’t have fun (er, I mean, smoke or drink), exercise.

YES I GET IT! So do lots of people, even many cancer patients. And I realize many more do NOT get it. A friend reminds me when I rant about this in person, that she watches some folks wonder why they can’t lose weight as they chow down on junk food. So, yes, I concede that while many seem to get the message about the benefits of healthy living, most people (Americans) don’t seem to get it. I do not understand how this ignorance continues, but that is my own failing, my own impatience and intolerance.

Anyway, this piece I had the misfortune of finding wonders why the benefits of healthy lifestyle are used in campaigns about heart disease, and other illnesses, but not cancer. I guess that is just another one of the funny things (not ha ha funny) about living in Cancerland. I am hyper-aware of every magazine cover touting how exercise and certain foods (flavor of the week foods, ha ha) help prevent cancer. So I am just flabbergasted when anyone, especially medical reports, claim that there is this big hole in the conversation around healthy choices and cancer.

I cannot even go into the whole problem I have with this constant focus on one half of the environmental factors in the discussion of causes of cancer. The phrase “environmental factors” refers to everything—diet, exercise, as well as pollution, crap in products and so on, or so I read once, somewhere. As usual, the onus is put on individual choices. I wish Chapter 13 of “Breasts: A Natural and Unnatural History” by Florence Williams could be required reading, for like, everyone, ever.

Look, for the millionth time, I’m not knocking healthy choices. Since completing treatment, I have certainly made lifestyle changes for the better, although I indulge in the occasional glass of wine or sweet treat, because I wish to enjoy my life. I just get so sick of how reductive the conversation has become about those environmental factors. And I am tired of the subtle blame the focus on individual behavior invites.

I keep thinking I have this issue out of my system, but no. I wrote this just a few months ago, but, well, here I go repeating myself. I pondered why I and others get a bit sensitive about this issue, about why we perceive this topic as a bit of an attack or blame.

Did You?

Posted on February 15, 2014 by Cancer Curmudgeon

Did you smoke, and for how long?

Did you drink, how much, how often?

Did you have kids?

Did you use a tanning bed?

Did you even try to lose weight?

Did you take hormones or the Pill?

Did you eat enough blueberries?

Did you eat tomatoes?

Did you eat meat?

Did you buy organic?

Did you eat a lot of sugar?

Because if you have cancer, you did it to yourself. Continue reading “Not Again”

So Cancerland, Town of Breast, is experiencing another sort-of controversy in the form of the announcement that all women can (should?) have BRCA testing, regardless of family history. This all because of the discovery that there are indeed women who have the mutation even with no family history of cancer, which is a bummer. Opinions are running around the internet. Mine is: So what? This news is just not good enough for me to get excited.

When I first started blogging, I wrote some wildly unpopular opinions about my disenchantment with BRCA testing. My strong family history moved me to get the test, back in the days when only Myriad conducted it, and I was negative. At the time I was relieved and used the results as a tipping point in my decision to go with a lumpectomy rather than a prophylactic double mastectomy. Much later I learned that BRCA is only present in a small percentage of breast cancer cases, and that my own chance of having the mutation was only slightly higher than average. Then by participating in a study, I learned the way my results were presented—a simple “you’re negative for both mutations”—probably was not all that accurate, there were other things I could’ve been tested for (had been tested for but no one went over it with me?) that would give me info. I’ve chosen to not dig deep into that, because, it makes no difference now. I’m not going to go back and have more surgery. Can’t afford it for one, and, well, me and surgery don’t get along—it makes me puke, literally, too much.

So as I stand here on the other side of the horrible whirlwind of treatment and all those terrible decisions, I’m left, as I said, disenchanted and unimpressed. Because at the end of the day, I still had cancer and getting tested could not alter that fact. It might come back, and this test cannot alter that either.

Sometimes it seems to me that the discussions and announcements about tests for likelihoods, screening tools (mammography debate), and the “weak” preventative measures (women with no mutation-inspired “high risk” getting double mastectomies for an early stage breast cancer, and it makes no difference in likelihood of survival), are like that joke about looking for your car keys under the streetlight. You did not lose your keys there, but the lighting is better than the dark area in which the keys DID get lost. The big news in Cancerland always seems to revolve around how to better find cancer faster and earlier, and how to figure out who is most likely to eventually get it. But there seems to never be any “big” announcements about how to prevent it from happening in the first place, keep cancer from coming back, or how to better improve the survival once it does happen, especially for those whose cancer has metastasized.

Oh sure, there is a prevention offered to those who do have the mutation—one portion of the poison, slash, and burn treatment—the slash portion (and I think some poison is offered too, I wouldn’t know, I’m negative). Yes, only putting up with one portion, the slashing, is far better than putting up with all three, certainly a bit less dangerous and difficult on the body. But, I still feel it isn’t good enough. Sorry, that is just the way I feel. I don’t think it is crazy to want a waaaay better option to prevent cancer than the current option, if one is so (un)lucky to know that cancer is a damn near certainty due to a mutation. All this info we can know about ourselves and the option is still shit.

I don’t mean to belittle or blow off the years of hard work many folks put into testing, studying, and drawing conclusions about women and breast cancer. They are trying make a difference, trying to make a dent in the so-called battle against cancer. And I don’t mean to belittle those folks who embrace these announcements, who are encouraged with what truly is an incredible piece of the puzzle. Perhaps I am being selfish or self-centered, as I am only looking at these 2014 announcements through the lens of my own experience—but, well, that is all I got: my own point of view.

The Risky Body wrote about this BRCA announcement a few days ago and made a comment that pierced me. She suggested maybe those of us NOT BRCA positive have resentment because those who do have this mutation have info that can be viewed as an advantage. I admit, I do have this resentment. I was angry during that whole Jolie kerfuffle. All those media types praising her for being brave and proactive pissed me off. When my aunt was diagnosed at the relatively young age of 50 (isn’t the average age for female breast cancer patients 61 or 62? Did I read that somewhere?), I was all “proactive” and got a mammogram that told me I had no evidence of cancer. Five weeks later, I find out I have a big ol’ 5 x 6.6 cm tumor. I did the BRCA testing, thinking surely, with an aunt, a grandmother, and a grandmother’s sister all having had breast cancer, surely, I’d be positive and could be proactive. Again, nothing. As I reflect back today my breast cancer seems both random and inevitable. And I feel I was powerless to stop it, and am still powerless in the face of a potential return. The more I scramble to “do something”, the less I seem able to do.

If this post sounds bitter, it is. This is why I have not been posting much this summer. Writing is not the refuge it once was, bitterness just pours out of my fingers when I sit down to my keyboard. So I’ve chosen to not be bitter, and have been having fun this summer instead. I indulged myself by working hard, bingeing on old TV shows with a friend (catching up with the rest of the human race in understanding why “Breaking Bad” is the best show ever), (re)reading a trilogy now that the final book came out. I’ll probably go back to that for a bit, but yes, I do have other Curmudgeonly posts in the works. I’ve sat on them, for fear of just being too, well, bitter-sounding.

But I just had to chime in on this topic. Some would say I should’ve sat on this post too. But, one thing blogging has taught me is that there are likely a few women out there whose situation (BRCA status, mammography failure, etc.) is similar to mine. And maybe a few of those feel the same as I do about all this mess. Our similar feelings won’t change anything but at least we are not alone.

So I, or maybe we, will sit here and wait. I’m tired of hearing about how more mammograms and more aggressive surgery do not help one bit. I’m tired of hearing about new or more tests which will tell anyone bad news (you, Jane Q. Potential Cancer Patient will surely get cancer). I’m sick of these announcements being presented as “good” news. I want to hear someone tell me they can lessen my chance cancer will come a “get me” again. I want to hear that no other woman will go through what I did, age 38, scared out of my mind and utterly bewildered I got breast cancer younger than anyone else in my family. In spite of all the awareness and knowledge, I knew nothing, and still know so little and still feel powerless.